Rant - so fed up

[Jollie93]

Just here for a very long rant and to see if anyone can offer any suggestions going forward.Still no diagnosis (all endo symptoms) pain started Mar22, had an ultrasound Nov22, lap July 23, adhesions and was told 'indications' of endo after surgery (whatever that means), biopsy came back negative so no diagnosis. Gynaecologist told me if the pain came back to go to gastro since my bowel had the most adhesions. Pain eased off completely for 9 months.

Started again 3 months ago and instead of being cyclical (used to flare up after my period every month like clockwork), but now the pain is constant.

Went to gastro, the first Dr was lovely, really thorough, booked me in for a small bowel MRI and said he'd like to get to the bottom of why I have adhesions and obviously find the cause of my symptoms. Had the MRI which came back clear, other than a few follicular cysts. Had to change drs because unfortunately the Dr I saw wasn't covered by my insurance (my bad for not checking first). So had to change Dr for follow up on Tuesday, who was honestly the most arrogant prick I've ever met (excuse my language). Started off the appointment by apologising for not responding to my email because he forgot (an email sent 3 weeks ago), started the appointment by saying he thought my symptoms were psychosomatic as a trauma response due to my mum dying from Ovarian cancer last year (he must be a psychologist too). Told him my pain started an entire year before my mum got sick and that she first had symptoms in feb23, the GP assumed she had coeliac disease 🙃 she was officially diagnosed in march and then died in may. Which quickly shut him up.

He then said that changing to wholegrain pasta, eating more salad and getting back to exercising regularly would relieve my symptoms. I told him I had stopped exercising all together when the pain started again, I've been in too much to pain to work so how I'm going to be well enough to start exercising is beyond me. He said that being stuck in the house all the time must be impacting my mental health, I said of course, but not nearly as much as the constant pain is. Thinks that most of my pain is due to constipation, even though that doesn't become a problem until I'm a couple of weeks into a flare up and I also regularly have diarrhoea. He said again that my symptoms were psychosomatic, that we might never find a cause and that I should make a follow up in 4-6 months time to see where things are but that he was not offering any further treatment.

I had mentioned the bowel adhesions to see if he had any thoughts regarding that, and as soon as I brought it up he started smirking, and said "some people just get them". It was so condescending and I could tell he probably thought I had no idea what I was talking about, I'm certainly no doctor but I have a degree and master's degree in Biology so I certainly understand how the human body functions and can interpret studies on bloody adhesions well enough. He cut me off every time I tried to talk, the appointment was around 13 minutes long (this is private) and he was just so dismissive, I cried the whole way home in my Uber, which was a low point.

I have an appointment with the gynaecologist who did my lap on Monday, so I'm hoping he can offer some help, but I'm not expecting much now. I don't even know what to ask for at this point. Just feel like giving up. I'm on half pay and my pay ends all together soon, I'm pretty close to losing my job, and I'm trying everything to help myself and just feel like I'm getting nowhere.

[Angellouise]

you need a gynaecologist who is an expert on endo Incision surgery is the only way to see the endo. My daughter went through years of laps showing nothing. I wish you luck

[Jollie93 in reply to Angellouise]

Thank you! So the Dr was a specialist, he wasn't BGSE accredited (I've seen that mentioned on here a few times) but I'm not sure how important that is. Still looking into other things it might be, but it's so strange because I have every single symptom. Hope your daughter is doing better now 😊

[Pink090]

Im so sorry your going through this. I will try to help if I can... im just confused with the lap- why didnt they remove the adhesions? I am guessing he wasnt a bowel expert? I had a lap in Feb 22, i think the adhesions were closer to my bowel and they removed it.. I would ask why it wasnt removed (if youve not been told) and also did they tell you the stage? i think its 4 stages. I had it removed byt after 6 months the painful periods came back, so I did 2 things at the same time and it eased the period pain (so im not sure what worked)...I cut out all gluten in my diet and had a few acupuncture sessions only a few as cannot afford to sustain that as its pricey ..from then instead of being bed bound for days on end, on the first day of my peroid it was painful but not excruciating like normally.

with regards to loosing your job- why do you think that? it would be very hard for them to sack you as this is a medical condition that is stopping u from working x

Hope you get some answers at your next appointment x

[Jollie93 in reply to Pink090]

Hey! Sorry didn't explain it very well, so they did remove the bowel adhesions and the Dr thought that was the source of pain but said to see gastro if it flares up again. Thanks, I'll look into those, have considered trying acupuncture. The gastro Dr put me on a wheat free diet for 30 days, and it helped a little with bathroom issues but still no difference to the pain, but trying it again at the moment and hoping to get some sort of relief 🤞 I've had a crazy amount of absence from work since this started, I think it totals around 180 days in 2 and a half years, so understandably they're getting a bit fed up. I also have a written warning in place for those absences, so I'm worried being off right now is going to be the nail in the coffin. Plus I don't have an 'official' diagnosis yet so don't think that helps much and thank you ☺️ x

[WanderingFox]

Oh gosh this is me, going on three years now. Laparoscopy (two years ago I think) was clear, first MRI was clear and private gynaecologist did not want to know me told me, before examining me, that it didn’t sound like I’d gynae issues.

I had endo eight years ago. I’ve had constant left sided hip and buttocks pain for three years now, it flares up, worst around my period and can cause sciatica.

I’ve also had three years of unexplained blood in my urine. Urology is keeping me on their books but given up looking and said that some people just get it. I asked about endo and got a look.

After irregular periods, constant thrush infections and blood spotting outside of my periods my GP now thinks my endo is maybe back but my referral to gynae (now three years old) can’t be escalated and they’re not seeing routine.

I’ve been private over the years to so many people and it’s draining. Another MRI showed hip impingement but not only wouldn’t explain half my symptoms but the orthopaedics surgeon said there is no testing or inflammation so he doesn’t think it’s causing my pain. I’m due back with him.

Also had constant bowel issues but my tests are clear so they won’t refer me to get it looked at.

I’ve had to book private for another gynaecologist.

Sharing your upset and hoping we both get somewhere soon. Just wanted you to know you’re not alone.

[Jollie93 in reply to WanderingFox]

I'm so sorry you're going through it too 😔 I couldn't relate to your comment more. It's sometimes like drs think that we are just going there for fun? It's so awful that you have a history of endo and they're in no rush to get you referred back to gynaecology. I'm the exact same, I used to randomly get blood in my urine, and also still get awful hip pain but on my right side. I'm so sick of drs doing one test that comes back clear and then assuming there's no need for further investigation, I think they forget these tests aren't infallible. I've had abnormal blood results when I've been well, and normal when I've been feeling awful. Also when my mum got sick her bloods came back normal, even though she had an extremely rare aggressive stage 4 cancer, the body works in mysterious ways and you'd think the professionals would pay more attention to that 🫣 thank you ☺️ I really hope we get some help and progress soon!

[CFin]

What an awful experience with that doctor! I suggest changing doctors again! I’m sick of dismissive patronising doctors! You deserve better! Don’t give up pushing for help! I’m sorry that you’re in pain too.

Just a couple notes from my own experience. I suggest not adding fibre to your diet! In fact exclude as much as possible for a limited period of time to see if it helps (2-3 months). I was given this advice by a gastro (I thought she was crazy at the time!) but it did help me. It calmed my stomach and helped stop the constant diarrhoea. Then gradually start adding foods back in one by one to see if your body reacts, kind of like a modified FODMAP diet!

Secondly, if you still have your appendix, get it checked out in case you’re having chronic appendicitis (I did, thought it must be endo, then it burst but it had been a problem for years!). They don’t seem to care to check it if you’re over 30, I’m 51 and it happened last year. I was in constant undiagnosed pain for about 5 years before it actually burst, multiple scans (MRI, US) didn’t pick it up!

[Jollie93 in reply to CFin]

Yep he told me to book an appointment on my way out, safe to say that didn't and won't happen 😂 and thank you! Thanks I'll try that, I have tried before but just for 30 days so maybe I'll have more success with 2-3 months and a proper elimination diet. I'd never even thought about that, I can't believe you had to suffer with it undiagnosed for 5 years, sorry 😞 will definitely look into that and mention it to my dr, if both MRI/US didn't pick it up, it shows that the "normal" tests aren't quite so bulletproof after all!

[CFin in reply to Jollie93]

It’s worth just ruling it out 👍 I wouldn’t wish what I went through on anyone! Ultimately it was only found on ct scan. Hopefully yours is fine 🤞🧡 and that you find a better doctor to help you !

[Jsrzb]

Omg these doctors are a joke trying to make you think it’s all in your head drives you more crazy ! I’ve had appointments like this and it’s funny they try sit there saying it’s your mental health when they just make it 100 times worse going on like that , I feel for you hopefully you get answers because having the symptoms you have is not normal and you surely can’t have adhesions for no reason. Hope your okay and get some answers soon don’t loose hope x

[Jollie93 in reply to Jsrzb]

Yeah it's so awful! I can guarantee if they were experiencing the pain we are, they would be constantly asking for help too. Mental health and IBS seem to be the scapegoats 😂 that's what I think too, and thank you ❤️ x

[BloomingMarvellous]

Yea gods , the f….g arrogance of them. Talk about I have a theory about you “because you have pain they choose not to understand “. After a good 48yrs of not being properly diagnosed, wrecking two good careers, education, sporting opportunities, making single parenthood a nightmare and leaving me financially crippled I sympathise utterly with you. Being told having a hysterectomy at 19 wasn’t anything to cry about ( when faced with the prospect), told to get pregnant to deal with my pain, told it was in my head, minimised, miscarriages and since my 40’s unable to work at all , flooding for weeks on end and being told I was lazy …I have truly had it with these arrogant people taking out of their backsides. When I finally got diagnosed they decide because I am post menopausal that the whole thing isn’t worth treating despite the ongoing issues - for me it hasn’t stopped which isn’t that unusual. They are impossible. These medics need to be held to bloody account. Today after a lifetime of this grim reality and constant UTI’s a urologist brightly suggested perhaps I had endo on the bladder and possibly kidneys- well, no shit Sherlock could have told you all that 48 yrs ago .

Take out ? Register that they are being inappropriate and unprofessional.

Let them know the financial consequences of their inaction and pontificating for you and nail them to an answer.

We can be clear, firm and polite but we do not need to tolerate this rubbish anymore. Enough is enough.

[Jollie93 in reply to BloomingMarvellous]

The arrogance is on another level 😂 omg I'm so sorry you're going through this, I can't begin to imagine 48 years without being properly diagnosed, that's so awful. I honestly can't believe that hysterectomy and getting pregnant are the two options you get, as if getting pregnant and having children will be easy when you're living with chronic pain and having a hysterectomy is a HUGE deal. Saying that because your post-menopausal it isn't worth treating, is honestly disgusting imo. I really hope you find a good Dr and get some proper help/treatment and that you're doing okay. Thank you, I will, enough is definitely enough. I'm done being overly nice and will be questioning everything now. I'm going to my appointment on Monday armed with evidence, and will definitely nail them for an answer, I can already predict the eye roll when I turn up with a folder of documents x

[BloomingMarvellous]

Nail their arse for all of us 🤣